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Any suggestions for conversations I should have?

Hi all!

My name is Kristy and I'm a young woman living with lupus. I've been dating a really great guy for awhile now and I want to make sure that I have conversations with him about me being sick now so that he has a chance to process everything before I have a flare up. I've had this be an issue in the past, and I wanted to reach out to you all and see if there were any suggestions you have for me.

Are there any conversations you think might be helpful? We're trying to be pretty open about the whole thing, but as this is my first serious relationship post-diagnosis I'm trying to be as prepared as possible.

I'd be interested in hearing what people have to say about this, too. I'm in my early thirties and single, and I've honestly been avoiding dating because I'm convinced no matter all my good qualities, no one's going to want to stick with someone who's broken. How do people handle dating while chronically ill?

Also, Kristy, not to divert from the main topic of your thread, but can you tell me about how you first disclosed having lupus to your boyfriend? How did he respond?

The Following User Says Thank You to Derrie For This Useful Post:

I would just share with him your limits, but explain you can still do plenty especially if you are having a good day. Me and my boyfriend have been together for almost 3 years and I knew him before I was even diagnosed so he's been there for the whole fun ride. A big conversation we've had to have several times is about my limits. He knows I can do almost everything, but with limits. I can't be out in the sun for hours, but we can go to the park. I can go on a small hike, but it has to be somewhere that has a lot of spread out benches. We can go to dinner and a movie, but he has to tell me first so I make sure to grab warm clothes. For me thats always the biggest thing. It doesn't effect too much of our relationship, but knowing I can't do some things is very important. He has pushed my limits before, which caused me to be upset. He once told me "I forget sometimes that you're sick, until you're sick". Its hard for them to understand we have things wrong with us when they can't always see it. They can't see how tired or sore we are, so sometimes gentle reminders are needed.

"A bad cold wouldn't be so annoying if it weren't for the advice of our friends."~ Kin Hubbard

I think just information about the disease and being clear that it isn't a death sentence is really important. I also think it is important that he understands that when you flare you aren't just being lazy. I would have a copy of The Spoon Theory there for him to read and to keep. It is the single best thing that I have found when it comes to making people understand what bad days are like.

MariSuccess is not final, failure is not fatal: it is the courage to continue that counts.

The Following User Says Thank You to tgal For This Useful Post:

I definitely have had some negative experiences with dating so far with lupus (it seems to change things a bit...I'd def discuss over inbox more if you're interested), but my boyfriend has made it easy. We met at a bbq hosted by friends, and he heard about it when a friend was asking me how my joints were. We obviously wound up flirting, but he asked about it a bit, and I told him that if someone can't handle it they can get out of my life (bitter much? lol). He definitely understood that point and has been patient so far.

Good luck with your dating situation...remember, you aren't broken, and although I don't know you, I'm sure that anyone would be lucky to have you!

Thanks, all!

Thank you all for your responses! I will definitely keep this in mind in the future...I never thought of having him read the spoon theory, but I definitely will do that,the spoon theory is really helpful.

I definitely have had some negative experiences with dating so far with lupus (it seems to change things a bit...I'd def discuss over inbox more if you're interested), but my boyfriend has made it easy. We met at a bbq hosted by friends, and he heard about it when a friend was asking me how my joints were. We obviously wound up flirting, but he asked about it a bit, and I told him that if someone can't handle it they can get out of my life (bitter much? lol). He definitely understood that point and has been patient so far.

Good luck with your dating situation...remember, you aren't broken, and although I don't know you, I'm sure that anyone would be lucky to have you!

Damn straight anyone would be lucky to have me! I may follow up with you for dating advice when I'm feeling a bit better. Been under the weather this week, and even typing seems like a huge chore. I am happy to hear you found a keeper, though!

The spoon theory is the greatest idea EVER! Nothing has illustrated the way we feel better than the spoon theory. I've yet to meet anyone who doesn't understand the spoon theory. Speaking of the spoon theory, I really should get a bouquet of spoons for me desk at work... but I digress. Anyhow, my advice is to be honest. With the guy and yourself. If he suggests doing something you know you couldn't do, don't push yourself and try to convince yourself you can because it is just going to bite you. You could introduce to our site or share any books or brochures you have on Lupus with him. Let him know he can ask you anything. He may have a lot of questions, he may not have any at all but let him know the door is always open.